‘Are you an 18th-century peasant?’
‘Isn’t TB in the same category as syphilis? Like, from the olden days.’
‘My Great Uncle Neil lost a lung from that.’
These are just some of the responses I’ve had when telling people that I was diagnosed with tuberculosis last year.
The journey to my diagnosis was long and confusing, which was hardly helped by the idea that it isn’t ‘modern-day disease.’
Hearing the results after nine months of testing was a bittersweet moment – I was relieved that I finally had a name to put to the ugly face of my symptoms, yet I knew very little about the condition itself.
My symptoms first began in early 2022 when I was 27, starting with rapid weight loss.
Being naturally thin, it was immediately assumed by health professionals that I was suffering from anorexia. As I was made to meticulously keep food diaries and attend therapy groups – my pleas of never being hungry were ignored.
I did what I was told, but my body didn’t want food. The thought of eating made me queasy and trying to eat three meals a day seemed impossible. I was sick and too tired to chew – opting for smoothies and soups to get by.
As the months rolled on, I turned sheet white, clothes hung off my skeletal frame and a cough I’d been dealing with worsened – which I put down to smoking (I was smoking about 10 cigarettes a day at the time).
Only when I started hacking up blood with such ferocity that the basin would turn bright red in May last year, did I act.
I was living with a boyfriend, who urged me to go to the hospital. Like myself, he was clueless and worried – we’d both never seen anything like it before.
After whisking myself off to A&E, I was sent home with a diagnosis of pneumonia and a week’s course of antibiotics, to little effect.
Weight was still dropping off me, and my BMI was down to 14. I was fired from my part-time retail job as I could barely stand up for a five-hour shift. This was seriously disheartening, but I could do nothing; I was more of a deadweight than a productive team member.
Coworkers had side-eyed me as I bumbled in wearing multiple jumpers on a scorching summer’s day, clearly exhausted and freezing. Looking back, they must’ve thought I had a constant hangover.
The next time I coughed up large amounts of blood, the doctor suspected a pulmonary embolism. After extensive tests and a difficult extraction of nine vials of blood that left me weak and frustrated, that, too, was written off.
Next, I was given a CT scan, which showed a raging infection in my lungs. After three different sputum samples returned positive for tuberculosis, we’d finally discovered why I had been unwell for nine months.
Obviously, I was shocked and refused to accept my diagnosis. Maybe my results got mixed up with someone else’s – or there was some confusion in the lab? I Googled ‘what illnesses are commonly misdiagnosed with TB’ and pitched that to my doctor, demanding more tests.
But every time I complained, I was assured the prognosis was correct. The only option was to take my medicine.
When I thought of TB, it rang bells of destitute Victorian authors coughing up blood into handkerchiefs or old photographs of TB wards with frail patients crammed into corridors – I just didn’t seem to fit the bill.
My knowledge was suitably limited – I knew it was deadly but understood nothing of whether it was completely treatable. I picked up a massive bag of medicine later that day, and reality slowly started to sink in.
There were a lot of emotions, but sadly I had to process them alone during a two-week isolation period while I took antibiotics. After this isolation period I was no longer contagious and a danger to anyone else – but the TB still lay dormant.
I felt hopeless and very alone. The situation was entirely out of my control, and my future wasn’t looking too bright.
We still had no idea how I caught the disease – I could have possibly contracted it on my travels to Southeast Asia three years before, but there was no way to tell.
Loaded up on 11 antibiotics a day, I was under strict instructions to take them on an empty stomach first thing in the morning. The high dosage made me feel tired, nauseous and incredibly lonely. My hair started thinning, and all my bodily fluids turned bright orange.
Being able to rejoin society again after a fortnight was liberating, but the road to recovery remained arduously long.
Usually, treatment for TB is six months, two of which are spent on high-dosage antibiotics. However, I have a strain resistant to a front-line drug, so my treatment will total nine months.
Friends and family were worried for themselves and me. My dad had come out of remission for cancer and immediately panicked.
Reassuringly, it’s tough to catch TB; you’d have to cough directly for hours in a poorly ventilated room at someone to infect them. Something I hadn’t done around anyone.
Even then, most people’s immune systems can ward off the virus, or it becomes latent. To put it in perspective, around one third of the world’s population has the virus dormant, but only an unlucky portion will become seriously ill (around 5-15%).
Still, some friends wanted reassurance; others distanced themselves, preferring to know as little as possible about what I was going through.
My neighbours were my greatest help during isolation, bringing food and banter to keep me going. I will forever be grateful for the compassion they showed me during that horrible time.
I am now on month four of my treatment and continue with regular checkups. The antibiotics make me feel seasick, but I now take them in the evenings to sleep off nausea.
However, I’m still met with skepticism, laughter or confusion when I tell people about my illness. Some speak to me from an awkwardly far distance, clearly worried they can catch it from me.
The ‘God, how do you get that?’ query is common, and some wary people seem to think I’m attention seeking – trying to be special and different in the era of Covid.
I’ve also been accused of using it as a farfetched excuse to wrangle out of dates and parties. I get tired quickly and struggle to stay up past 9pm. This is the hardest part, as I love being out and about and have had to adjust to a slower pace of life.
I understand why people react as they do. There’s a recognition of its severity and potential deadliness. And as tuberculosis has been largely confined to the history books, there isn’t much awareness around the topic – people are always most afraid of what they don’t understand.
Although I no longer have active TB, the bacteria will remain dormant for months – hence the grueling duration of the treatment.
In sharing my story, I hope to make people reacquainted with tuberculosis. It’s still a very real threat, being the world’s leading infectious killer.
If you spot any warning signs (rapid weight loss, decrease in appetite, fatigue, night sweats, coughing up blood), don’t write off the possibility due to embarrassment or skepticism – my road to diagnosis was long, and my road to recovery even longer.
But it’s entirely curable, and I’m feeling much more positive. Recovery is a marathon, not a sprint; dealing with this has made me grateful for all the wonderful things and people in my life.
I’m lucky we live in an age where TB isn’t a death sentence, and I have an amazing doctor who’s encouraging and endlessly positive. I’ve become a lot more conscious about my health and looking after myself, which I count as a silver lining.
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